Sign our petition against the CBT in the reference centres!

Discussion in 'Fibromyalgia Main Forum' started by Lijda, Oct 29, 2008.

  1. Lijda

    Lijda New Member

    Please help

    http://www.ipetitions.com/petition/CVScentra/

    This is for Belgium, in the Netherlands we have the same problem.

    On September 30 j.l. Signals were the Federal Knowledge Center for Health Care (KCE) and the Health Council that the reference centers for ME / CVS have not achieved their objectives, that patients are not cured and that the further financing of this project is in question. That the centers, according to the results are not good geboerd have, may have everything to do with the fact that ME / CVS is a neurological disorder with immunological and endocrine abnormalities. Cognitive behavioral therapy and gradual exercise, as applied in the annual reference centers, found not only inefficient, the exercise is even harmful to the patient. The reason for the failure of reference centers is a fundamentally flawed approach to this condition.
    The reference centers for ME / CVS in 2006 already had a negative assessment, but remained up to now further financed by the government. Before the end of this year, very soon, therefore, is on the further funding of the centers - and therefore also on the fate of the 30 to 40,000 patients in Belgium - decides.

    Despite all the research in recent years remain many, including aid workers, doctors, RIZIV, mutual benefit societies and insurance companies ignorant about developments in biomedical research on ME / CVS. ME / CVS patients can be clearly demonstrated through specific blood analysis and other tests. The main detectable abnormalities in these patients have an impaired immunity, various chronic infections, low exercise capacity, poor repair capacity (effort intolerance), memory disorders and concentration problems, impaired cardiac output, impaired metabolism, decreased blood flow in the brains, and stomach - and bowel .

    The Belgian government still stubbornly refuses ME / CVS to recognize as a physical illness. As a direct result, ME / CVS purely psychosomatic patients treated with cognitive behavioral therapy and gradual exercise, although studies in 4000 (!) The usefulness of this approach strongly opposed speak and especially the gradual exercise HARMFUL regarded as outright. The existing knowledge was Biomedical by the reference centers so systematically ignored. Although there since 2003, a clinical definition for the provision of a correct diagnosis, we continued to use outdated and subjective criteria, which is a wrong diagnosis in the works. In addition, heavily instrumented validated patients systematically refused for a treatment in the centers. The success rates of 40 and even 70% of the centers refer to themselves, are also very biased. A spontaneous recovery of 32% (as demonstrated by Prince and Bleijenberg) plays here probably more than that. The effectiveness of CGT in ME / CVS appears in the daily practice is not, on balance positive: more patients reported by this therapy out to be worse than forward. Research shows that even the gradual exercise quite harmful to the patient and the symptoms worse. One can therefore rightly wonder why these therapies, despite the poor results, yet are being imposed on ME / CVS patients in Belgium. There is ME / CVS patients, therefore, an urgent need for policy changes and treatments based on biomedical findings. There is also need for a solid information to physicians and other care providers, insurance companies and expertise of doctors RIZIV, mutual benefit societies, etc. .. So that ME / CVS patients can get the care they deserve. In addition, an early diagnosis and appropriate treatment the patient a lot of unnecessary suffering to save. Children who early correct biomedical treatment, have a great chance to completely heal. It is criminal to deny them this!
    The government can help them through the financial support biomedical research and reference centers into specialized centers whose operation is based on biomedical research, that leaves no doubt as to the nature and approach of this serious disease. The World Health Organization (WHO) and several countries such as Canada and the United States, recognize ME / CVS as a neurological disorder. In Norway and Catalonia, the government this - rightly - also finally recognized and biomedical centers where there are no psychiatrist are concerned.
    Meabe association hopes that the Belgian government now in their footsteps will soon join. The available financial resources would no longer be wasted on the reference centers, which have proven their ignorance sufficient. The biomedical research deserves all the support it can get to the life of ME / CVS patients significantly improved by custom treatments work and research into the exact reason to continue.

    We ask:
    - That CVS / ME is recognized as a neurological, immune and endocrine disorder;
    - A name change from CVS to Me;
    - Development of an "objective" and providing protocol for diagnosis of disability / invalidity based on Canadian criteria (2003) instead of the Fukuda criteria (1994);
    - Shifting the bio-psycho-social model to a biomedical approach;
    - Establishment of an independent commission biomedical;
    - Creation of regional centers;
    - Establishment of a parliamentary inquiry;

    Sign the petitionFields marked
    * are required.

    * Full name:


    * E-mail:

    * Address:

    Relationship to CVS (eg Patient, family, ...):


    Just a sign for a better live for all ME/CFS patients

    http://www.ipetitions.com/petition/CVScentra/

    Thanks a lot.

    After you sign the petition, you'll be taken to a donation page. This does not go to CFS research, it goes to the petition website. Just close the page; your signature has already been added, regardless of whether you donate.

    You can use the translate

    http://www.google.nl/language_tools?hl=nl

    or see Mezombie's post below for a translation

    Thanks MEZombie for the translate.

    Bye/Doei Lijda
    [This Message was Edited on 11/02/2008]
  2. Leaknits

    Leaknits New Member

    Hi,

    Went to both sites posted and can't read them...more than likely the site pages contain some sort of Click Here For Translation but without being able to read the language I couldn't find such a thing.

    Sorry.

    Lea.
  3. mezombie

    mezombie Member

    Thank you for bringing this to our attention, Lijda. Here is Google's translation of the text of the petition:

    --------------------------------------------------------------

    On September 30 j.l. Signals were the Federal Knowledge Center for Health Care (KCE) and the Health Council that the reference centers for ME / CVS have not achieved their objectives, that patients are not cured and that the further financing of this project is in question. That the centers, according to the results are not good geboerd have, may have everything to do with the fact that ME / CVS is a neurological disorder with immunological and endocrine abnormalities. Cognitive behavioral therapy and gradual exercise, as applied in the annual reference centers, found not only inefficient, the exercise is even harmful to the patient. The reason for the failure of reference centers is a fundamentally flawed approach to this condition.
    The reference centers for ME / CVS in 2006 already had a negative assessment, but remained up to now further financed by the government. Before the end of this year, very soon, therefore, is on the further funding of the centers - and therefore also on the fate of the 30 to 40,000 patients in Belgium - decides.

    Despite all the research in recent years remain many, including aid workers, doctors, RIZIV, mutual benefit societies and insurance companies ignorant about developments in biomedical research on ME / CVS. ME / CVS patients can be clearly demonstrated through specific blood analysis and other tests. The main detectable abnormalities in these patients have an impaired immunity, various chronic infections, low exercise capacity, poor repair capacity (effort intolerance), memory disorders and concentration problems, impaired cardiac output, impaired metabolism, decreased blood flow in the brains, and stomach - and bowel .

    The Belgian government still stubbornly refuses ME / CVS to recognize as a physical illness. As a direct result, ME / CVS purely psychosomatic patients treated with cognitive behavioral therapy and gradual exercise, although studies in 4000 (!) The usefulness of this approach strongly opposed speak and especially the gradual exercise HARMFUL regarded as outright. The existing knowledge was Biomedical by the reference centers so systematically ignored. Although there since 2003, a clinical definition for the provision of a correct diagnosis, we continued to use outdated and subjective criteria, which is a wrong diagnosis in the works. In addition, heavily instrumented validated patients systematically refused for a treatment in the centers. The success rates of 40 and even 70% of the centers refer to themselves, are also very biased. A spontaneous recovery of 32% (as demonstrated by Prince and Bleijenberg) plays here probably more than that. The effectiveness of CGT in ME / CVS appears in the daily practice is not, on balance positive: more patients reported by this therapy out to be worse than forward. Research shows that even the gradual exercise quite harmful to the patient and the symptoms worse. One can therefore rightly wonder why these therapies, despite the poor results, yet are being imposed on ME / CVS patients in Belgium. There is ME / CVS patients, therefore, an urgent need for policy changes and treatments based on biomedical findings. There is also need for a solid information to physicians and other care providers, insurance companies and expertise of doctors RIZIV, mutual benefit societies, etc. .. So that ME / CVS patients can get the care they deserve. In addition, an early diagnosis and appropriate treatment the patient a lot of unnecessary suffering to save. Children who early correct biomedical treatment, have a great chance to completely heal. It is criminal to deny them this!
    The government can help them through the financial support biomedical research and reference centers into specialized centers whose operation is based on biomedical research, that leaves no doubt as to the nature and approach of this serious disease. The World Health Organization (WHO) and several countries such as Canada and the United States, recognize ME / CVS as a neurological disorder. In Norway and Catalonia, the government this - rightly - also finally recognized and biomedical centers where there are no psychiatrist are concerned.
    Meabe association hopes that the Belgian government now in their footsteps will soon join. The available financial resources would no longer be wasted on the reference centers, which have proven their ignorance sufficient. The biomedical research deserves all the support it can get to the life of ME / CVS patients significantly improved by custom treatments work and research into the exact reason to continue.

    We ask:
    - That CVS / ME is recognized as a neurological, immune and endocrine disorder;
    - A name change from CVS to Me;
    - Development of an "objective" and providing protocol for diagnosis of disability / invalidity based on Canadian criteria (2003) instead of the Fukuda criteria (1994);
    - Shifting the bio-psycho-social model to a biomedical approach;
    - Establishment of an independent commission biomedical;
    - Creation of regional centers;
    - Establishment of a parliamentary inquiry;

    Sign the petitionFields marked * are required.

    * Full name:
    * E-mail:
    * Address:
    Relationship to CVS (eg Patient, family, ...):
  4. Lijda

    Lijda New Member

    mezombie:
    Thanks for the translation, which I greatly appreciated.

    Just a sign for a better live for all ME/CFS patients
    http://www.ipetitions.com/petition/CVScentra/

    Groetjes/bye Lijda

    Thanks
  5. mezombie

    mezombie Member

    You're welcome, Lijda.

    I think it's terrible what you in Belgium are put through.

    I also think we, in the USA, will see more GET and CBT if Belgium and other countries are successful in pushing these treatments and ignoring the truth about ME.

    To better days!
    MEZombie
  6. mezombie

    mezombie Member

    Hi again, Lijda,

    I think many people may only read your first post, and don't see the translation.

    Maybe you could edit your first post and copy and paste the translation in my post into your post? Or you could add "see Mezombie's post below for a translation".

    You are getting a lot of views, which is good.

    I didn't realize you were so isolated. I am too, as are many. It makes dealing with this so much harder. I am so sorry you are in this position.

    Best wishes,
    Mezombie
  7. Lijda

    Lijda New Member

    Hi MEZombie

    Thank you for the tip, I got a copy of it and put in my first message.
    Something is going wrong.
    What exactly goes wrong, then I do not understand.

    I am no longer isolated, thanks carnitene and Q10
    And I feel better than in those other 6.5 years.
    Personally I have been through CBT much more ill and with me many.
    The isolation is the problem off the ME/CFS, it does not exist.

    @French I do not need the address.
    The last time I have done nothing with that phonenr.

    Groetjes/bye Lijda
    [This Message was Edited on 10/31/2008]
  8. mezombie

    mezombie Member

    Hi again, Lijda,

    I think the problem is that the Google link you posted takes one to a Dutch Google site.

    The one that's in English is at
    http://www.google.com/language_tools?hl=en

    I scrolled down to "translate text", copied and pasted the petition text in that area, and then asked for the Dutch to be translated into English.

    Kathy622, I don't think there is any other way to translate the text. I don't think ipetitions has that kind of function built in. If it does, I sure can't find it!

    Lijda, I'm glad Carnitine and CoQ10 help you. I took them many years ago without any effect, but recently started them again with some other treatments.

    So far we don't have any forced CBT in the US, but with Europe continuing the push for this treatment, I fear more and more doctors will "suggest" it to their patients.

    Oh, and ME does not exist in the US either!

    Take care,
    mezombie
    [This Message was Edited on 11/01/2008]
  9. Lijda

    Lijda New Member

    HI MEZombie

    I had made an attempt to translate, but there were too many words between which the translator is not recognized.
    Apparently, the Englishgoogle version translator for English text maby better ;))
    I think now everything is clear. I hope.
    Just a sign, for free.

    I hope that the treatment you follows now respond.
    Personally I wait now how far I do, that's still a very big fight, because I'm gone backwards by CBT and doctors do not help. And I did 4 year survival that has a big impact on my live.

    I read that you have humor, me too which I also find myself whahahaha

    Hoply You understand my words, I use the translate.
    I think so;)

    Take care too

    Bye/ Doei= dutch voor bye
    Lijda

    [This Message was Edited on 11/02/2008]
  10. Lijda

    Lijda New Member

    Hi Hi

    We can still using more vote at the moment,
    there are 1100 votes now.
    Anonymous is also possible.
    Those who voted, thank you.
    And for those who still want a voted

    http://www.ipetitions.com/petition/CVScentra/

    Just a sign for a better live for all ME/CFS patients

    Thanks

    Bye/Doei Lijda


  11. Lijda

    Lijda New Member

    Hello

    http://www.ipetitions.com/petition/CVScentra/

    Just a sign for a better live for all ME/CFS patients

    Thanks

    Bye/Doei Lijda





  12. Bluebottle

    Bluebottle New Member

    signed it, thank you!
  13. Lijda

    Lijda New Member

    Thanks Bleubottle

    http://www.ipetitions.com/petition/CVScentra/

    Bye/doei Lijda
  14. tansy

    tansy New Member

    and have emailed others to let them know about it.

    Lijda have you heard about the new European Alliance? I will be posting about that in a new topic.

    tc, Tansy
  15. Spinetti

    Spinetti New Member

    Thanks, Lijda.

    spinetti
  16. Lijda

    Lijda New Member


    Thanks Spinetti

    @ Tansy
    I saw the site! For all ME / CFS patients will be a relief. Such a constituency, we also desperately needed. When I saw the site that gave a sense of right, see that ME/CFS is Real.
    So I am all these years "really" been sick.

    It is here in the middle of the night I'm awake just because I'm about to much dosing with q10. Normally I sleep like a rose. LOL

    Can you read it, translate on earth;) For ME/CFS patients white a brainfog.

    http://www.euro-me.org/about.htm

    Tanks for all the signs.

    Bye/doei

    Thanks = Bedankt
  17. Lijda

    Lijda New Member


    http://www.ipetitions.com/petition/CVScentra

    Just a sign for a better live for all ME/CFS patients

    Thanks;)

    Bye/doei

    Lijda
    [This Message was Edited on 11/20/2008]
  18. LaRiva

    LaRiva New Member

    BUMP UP

    Please sign the petition against the medical malpractices in Belgium:

    http://www.ipetitions.com/petition/CVScentra/

    At the end of the petition text (below in English)
    you have to fill in your name, address, e-mail, and you can appear as anonymous.

    Thanks for your help!

    _____________________________

    September 30th 2008, Belgium : the Federal Knowledge Centre for Health Care and the National Health Advisory Council reported that the reference centres for ME/CFS did not reach their goals, that patients were not cured and that further financing of this project was being questioned.

    The poor results of the centres have as probable cause, that ME/CFS remains a neurological disease, with immunological and hormonal anomalies.

    Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET), practiced in these centres for years, were not only inefficient, but also HARMFUL for the patients. The reason for these abhorrent poor results is a fundamentally wrong approach of ME/CFS in these reference centres.

    These centres were already assessed in 2006 and this audit was also negative. Notwithstanding this negative audit, the centres continued to receive funding from the government up to now. Before the end of this year, this means very soon, the Belgian government will decide upon the possible further funding of these centres – and so they will decide about the fate of the ME/CFS patients in Belgium, approx. 30.000 to 40.000 patients.

    Despite of the abundant biomedical research of the last few years, many health care workers, medical doctors, the National Institute for Health Care and Invalidity (RIZIV), Health Care Insurance companies, private insurance companies, remain ignorant about the development and the progress of this biomedical research. ME/CFS can be clearly diagnosed by means of specific blood analyses and other tests.
    The most important anomalies that can be clearly demonstrated are a disturbed immunity, various chronic infections, a low exercise capacity, a very poor recuperation ability (exercise intolerance), memory loss and concentration problems, a disturbed cardiac output, a disturbed metabolism, hypo-perfusion of the brain, and gastro-intestinal problems.

    The Belgian government still stubbornly refuses to acknowledge ME/CFS as a physical condition. As a direct result, ME/CFS patients are only treated as psychosomatic patients with CBT and GET, despite of the fact, that 4000 (!!!) research papers strongly contradict the benefit of this approach and especially consider GET as HARMFUL.

    The existing biomedical knowledge was and is systematically ignored by the reference centres. Despite of the fact that, since 2003, there is a clinical definition, they continued to use subjective and obsolete criteria, which can result in a wrong diagnosis. Moreover, badly impaired patients were systematically refused for a treatment in these centres. The success rates of 40 % and even 70 % that are referred to by the centres are strongly distorted figures. Spontaneous recovery of 32 % (as demonstrated by Prins et Bleijenberg) certainly influences these “success” figures.
    The adequacy of CBT in ME/CFS patients in daily practice is non-existent : there are more patients who report a setback than patients who feel better. Research has proven that GET can be harmful and exacerbates the symptoms.
    The following question pops up : why are patients in Belgium forced to undergo these therapies, despite of the bad results ? There is an urgent need for change of policy and treatments based on biomedical findings. Furthermore there is need for a thorough information campaign aimed at MD’s, Health Care Insurance companies, expertise doctors of private insurance companies etc….in a way that ME/CFS patients can receive the care and treatment they need.
    Moreover, a timely diagnosis and a patient-tailored treatment can avoid a lot of unnecessary suffering. Children who receive early in their illness a correct biomedical treatment have a great chance to recover completely. It is a crime to deny this !
    The government can help by subsidizing the biomedical research and to transform the reference centres to specialized centres that treat the patients based on biomedical research, which leaves no doubt about the nature and the treatment of this serious condition.
    The WHO and several countries, such as Canada and the USA, recognize ME/CFS as a neurological condition.
    In Europe, the government of Norway and Catalonia (Spain) have finally come to the same conclusion and they will start biomedical centres to treat the patients. No psychiatrist is involved in these centres.

    The patient advocacy group MEAB ardently wishes that the Belgian Government will follow the example of Norway and Catalonia.

    The available funds should no longer be wasted to reference centres which have demonstrated their incapability.
    The biomedical research deserves all the support it can get to improve substantially the quality of life of ME/CFS patients, by using and elaborating tailor-made treatments and to continue the research for the exact cause.


    We demand :
    - the recognition of ME/CFS as a neurological, immunological and endocrinological condition;
    - to change the name CFS into ME;
    - to develop an “objective” protocol for diagnosis and establishment of disability by means of the Canadian Criteria (2003) in stead of the Fukuda criteria (1994);
    - a shift from the bio-psycho-social model to a biomedical approach;
    - the foundation of an independent biomedical commission;
    - the foundation of regional knowledge centres;
    - the foundation of a parliamentary investigation committee;

    The patient advocacy Group MEAB.vzw, or Myalgic Encephalopathy Association Belgium, defends the interest and concerns of the large number of patients in Belgium with Myalgic Encefalomyelitis (ME), popular better known as ‘Chronic Fatigue Syndrome’ (CFS).The MEAB group wants to inform everyone involved. The MEAB group wants to put the biomedical research under the attention of the government, with the aim of adapted measures being taken to enhance the quality of life of ME-patients.

    CVS-online, Information network for CFS/ME and Fibromyalgia, is an informative website aiming at informing patients and others involved with these conditions, and facilitating contacts with fellow-patients.
  19. LaRiva

    LaRiva New Member

    May I bump up this topic again? :)
    Thanks!
  20. Lijda

    Lijda New Member

    Thank you all for the support.

    It is to be hoped for all ME / CFS patients that once and for all the CBT disappears.

    That has nothing to do with ME/CFS

    Thanks LaRiva for bump up.

    I was absent ME ill.

    Bye/Doei Lijda